Emily’s Stage 4 DLBCL Non-Hodgkin’s Lymphoma

Emily was diagnosed with stage 4 diffuse large B-cell lymphoma (DLBCL), a subtype of non-Hodgkin’s lymphoma.

She describes undergoing chemo, being an AYA (adolescent young adult) cancer patient, how to ask for help and the support that made the most impact. Thanks for sharing your story, Emily!

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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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First Symptoms, First Steps

What were the first symptoms?

I had knee pain in my left knee, and I was already in physical therapy because I had just run a half marathon. After that, I had hip pain. I was in physical therapy for the hip pain, and that was resolved. But then one day I had excruciating knee pain. 

Lymphoma Diagnosis

Describe the first lymphoma diagnosis

My mom was with me. She wasn’t with me the first few [appointments], but I figured if this is going to be something, she should be with me. That way she can hear it; I don’t have to relay everything. We both had a suspicion it was lymphoma, so it wasn’t a shock. 

The doctor confirmed it was lymphoma. He did say, “If you’re going to have cancer, this is one of the better ones.” Trying to put a positive spin on it, I guess.

Describe the ultrasound

The following day, I went back down to Boston. They checked out my kidneys, but it was just a cyst. That was a frustrating moment. I remember calling my mom and saying, “What if it’s something more?” But it wasn’t.

How long did it take to get scan results?

The PET scan I did on Monday, the day I met with the oncologist. I had that in the morning, and in the afternoon I met with them. I don’t think they read it the same way someone else would read it, but it was the same day I got the results. The ultrasound was also same-day results.

Describe the 2nd biopsy

They did the first biopsy, and the diagnosis was lymphoma. They wanted to be sure, so after I met with hematology/oncology, they wanted to get me in for a repeat biopsy.

It was the same exact thing. This one was more painful afterwards. They had to make sure they got enough. They just gave me Tylenol. I was still a little out of it.

What was the diagnosis and stage?

It was primary bone lymphoma, then went to diffuse large B-cell lymphoma (DLBCL). After I had my first treatment, it was stage 4 non-Hodgkin’s lymphoma, and that was kind of a shock. It was in both knees, my tibia and my arm.

How to emotionally process the diagnosis

I feel I processed it how I needed to. I just kept my head held high. I knew I would get through it. Obviously, I didn’t want to, but I knew I’d be okay. My doctors told me you have a favorable outcome, so I never feared for my life. I don’t know why. I think it’s how my doctors handled it. I was grateful in that aspect.

After the first 2 treatments, there were days I was like, “Okay, I feel fine. People can live with cancer.” It was so hard because I had to quit my job, and I really didn’t do anything. It was still hard to just be at home doing nothing. I dealt with it in pieces emotionally.

Some days I was totally fine about it. Other days I let myself feel the emotion. 

Chemotherapy (R-CHOP)

What was the treatment plan?

She told me they would do R-CHOP, described mostly all the side effects and the timeline. The timeline was hard because my mom lives in Vermont and I’m in New Hampshire, and we commuted to Boston. Scheduling-wise, it was really hard.

Describe chemotherapy cycles

I was told it was every 21 days. I didn’t know what to expect or what I’d be feeling. The hard part was I didn’t want to leave home, but I didn’t want my mom to live with me constantly.

Treatment was Day 1, and then you come in the next week for labs, assuming everything’s fine. Third week, I was free.

It was realizing this is a huge thing that is really going to impact me. I think it built up. I was trying to hold it in for so long. It was realizing that was going to be hard.

How did you decide where to go for cancer treatment?

I didn’t have to pick them. It just so happened I was at physical therapy, and I saw a doctor there. He referred me to an orthopedic from Beth Israel.

Then they sent me to hematology/oncology. I didn’t pick. They were just like, “Here are your doctors.” I worked with a doctor and a fellow; they’re both great. I never had an issue with them. 

She actually got me a second opinion at Dana Farber. I didn’t even ask for it. She just wanted a colleague to weigh in on my case. I was already in Boston for that one doctor. Boston is a good place to be, so I never really questioned it.

The outpatient experience

For the R-CHOP chemo, I was outpatient. It was always on a Monday. My mom and I would go in, 11 a.m. or 12 p.m. or so. I would get my port accessed, and they’d draw labs.

Some days they took me back right then. Other days I’d have to sit in the waiting room for 45 minutes, and they’d bring me back.

It was a shot in the muscle. I would get baby hot flashes. They were short. I remember rolling down the window in the car, feeling really hot. I didn’t get my period for a really long time. That’s the point of it. 

They brought it up. I didn’t even have to think about it. I was just like, “Okay, I’ll do it.” It’s definitely in the back of my mind that maybe I won’t be able to have kids, or maybe it won’t be so easy.

It doesn’t have to affect me for the rest of my life, cancer in general, but I feel like it will.

Last chemo round

Round 6 was hard because it was my last round and 2 days before Christmas. My mom was with me. We went to chemo, and then the next day we drove home to Vermont. I felt miserable. I thought I would sleep in the car, but I didn’t.

I can remember Christmas. I know I was there, but I don’t remember what happened. I know I felt miserable, and I know I went to bed at 5 p.m.  It was a lot to go back and forth. 

The following week, I came back here for my scheduled PET scan, which was the last PET scan.

R-CHOP Side Effects

Chemo side effects

Summary: Nausea, tired, “chemo brain,” irritability, neuropathy in fingers

The first round, the first week I just felt headache-y. I wouldn’t say I felt 100%, but I felt fine, which is really weird. That was good, the first round, until about the third week. My hair started falling out.

I think in my third round, my doctor said rounds 3,4 and 5 are the hardest. She was 100% right. Round 2 was okay. I felt gross the first week, but nothing major. I felt nauseous but it was controllable.

Round 3 I felt really awful. Headache-y, so nauseous, everything tastes awful. I did get really bad mouth sores every round after that. It really hurt to swallow. Brushing my teeth was incredibly painful, so that was really hard.

Just being tired, nauseous all the time, isn’t really fun. I didn’t sleep much throughout this whole thing, so not sleeping was a side effect.

»MORE: Cancer patients share their treatment side effects

Hair loss

That was really hard.  I noticed it shedding. I have really long hair, and it was just shedding and kept coming. I did decide to cut it. I had a cut before my second treatment, and a few days after my second treatment I shaved it.

»MORE: Dealing with hair loss during cancer treatment

Cutting hair

I knew it was going to fall out anyway. I didn’t really care. I didn’t have anything to go off of. I just said, “I need this short because it’s all falling out, so just cut it.” It was okay. I didn’t really love it, but I just knew I had to do it. 

I’ve never drastically cut my hair. I had long hair all the time. You know it’s going to happen, but when it actually happens, it sucks. It’s hard. I dealt with it for a few days. It was really long. Then I was like, ‘I need to cut it,’ because it became more of a pain. 

I’d like to think I should’ve shaved it the first time, but I think cutting it first, I needed it in the moment. I cut it [short] and I hated how it looked, but it was still falling out. I knew it was really annoying, so I just had to do it.

I knew I had to do what I had to do to beat this, so I just went through it and didn’t question anything. 

»MORE: Dealing with scanxiety and waiting for results

Deauville score

They didn’t ever mention that to me, but I have access to all of my notes. I follow that a lot online. My first PET scan Deauville score was a 5. The mid-treatment scan was a 3.

Post-treatment PET scan results

(Deauville score: 1)

It was Day 14 of my cycle. My mom was with me. They told me it was good, that I’m in remission. My mom started crying because she was relieved. I was like, “I can breathe again, and this is what you work for.” I was actually slightly neutropenic, and I remember I felt miserable.

I cried a lot on the way home just because I was overwhelmed and I was tired. Also, I didn’t feel like I was done-done because I knew I had the methotrexate treatments after.

But I do remember in the lobby, my mom was like, ‘You did it!’ I was like, ‘Yeah, I can breathe again.’ 

My mom told my family that day, my immediate family, that I was good. But I didn’t feel euphoric or anything, which was really weird. I knew I had to go through the next treatments, so I guess I was waiting until that was done to say, “Okay, I’m free.” I think I was overwhelmed and didn’t feel good.

More Chemotherapy (High-Dose Methotrexate, Ibrutinib)

Why continue with more chemo?

When I met with the doctor at Dana Farber, he was the one who said, “You’re at risk for prophylaxis of the spinal cord.” I knew from then they wanted to do high-dose methotrexate, which is a different treatment.

I didn’t know when that was happening. He did also put me on ibrutinib, which is oral medication, so I was on that throughout. 

Because I was at risk for the prophylaxis, they just wanted to do it. I didn’t want it spreading, so I was like, “I’ll definitely do it.” I didn’t realize they were waiting until I was done with R-CHOP to do it, so I was like, “When’s it going to happen?” In my last round of chemo, they explained it to me. 

I had a follow-up. I consented for it, and they told me all the risks, side effects. That was 3 rounds of a week in the hospital each.

Hospital inpatient experience

I knew I wouldn’t sleep. One time they would have to draw labs and switch the IV at 1 a.m., so I was like, “I’m just not going to fall asleep until then.” They would draw vitals every 4 hours, so it was not great sleeping. 

A couple nurses told me to just take Ativan. They give it to you to fall asleep, but I woke up anyway. People do sleep. I just didn’t sleep. Each time I had a roommate. I remember the first one, she would sleep all day. I’m not someone who naps easily. I’m just like, “How?!”

A couple nurses, if you’re sleeping, they’ll let you sleep. All the nurses I had were super helpful, super nice.

What’s the follow-up since treatment?

I finished treatment on Valentine’s Day and left the hospital. I had a follow-up March 3rd and labs.

After that appointment, they did schedule a PET scan because they like to do it every 3 months, which had to be postponed because of COVID-19.

AYA (Adolescent Young Adult) Cancer Patient

I definitely felt I was having a hard time. I was trying to figure out what I wanted to do. I was waitressing. I studied nutrition and public health in college. I took a job related to that awhile ago, but it didn’t really pan out.

I had waitressed before, so I was like, “I’m going to waitress, make a bunch of money, take a trip and then try to figure out my life.” Everything was placed on hold, so I worked as much as I could for the summer.

I spent a lot of the summer dealing with the knee issue, anyway, so I didn’t really travel. Then the summer I got diagnosed with cancer, so the job was on hold. I had to quit working. I’m really thankful I had savings. My parents are behind me 100%, but having savings really helped.

I thought I would soul search throughout this time, but chemotherapy is a full-time job, which people don’t really tell you. I just did nothing for a long time, but one of the hard things is I felt I was overlooked because I’m not a child with cancer.

I’m not pediatric, but I’m not an adult with a family and children who has to do this. I’m not an elderly patient, where cancer is common. I felt overlooked a little bit, which was hard. I was by far the youngest person in the waiting room, so that was different.

Find your community

I definitely isolated myself more than I feel I should have. I’m an introvert. The hospital did have a young adult support group, which they tried to get me to go to throughout treatment.

But again, this was Boston, so I wasn’t going to go to Boston just for that. I never actually went until the one day it fell on a day where I was in the hospital anyway for the high-dose methotrexate.

I did go that one time. It was nice to meet with people. The social worker connected me with one girl who was kind of in the same boat. I’ve been talking to her one on one. That’s been good. I never thought I wanted to go to a support group or anything.

The support group, all the girls there were great, but I still feel I didn’t fit in 100%. It’s hard to find people who know exactly what you’re going through.

It was a small group, but they were all fully on the other side of treatment. Here I was just finishing treatment, and I still didn’t have any hair.

»MORE:  What kind of support cancer patients say helped the most

What’s helped you most?

Just realized that people can live with cancer. It’s a huge thing I never wanted to go through, never thought I would. A couple people told me cancer changes you, and I think it definitely did.

You can spend a lot of time in denial, but you just gotta do it. You’ve just gotta go through and trust your doctors. I did, fully. I knew I would get through this, so I just did what I had to do. It is really hard. If you let yourself feel the emotions, you just have to ride the wave.

Recovering during COVID-19

It’s so frustrating. I spent 6 to 7 months in a bubble, not being able to work. Financially, that was really hard. I thought I’d want to get back to work and get my life back.

I realized I really didn’t want to, and that was really hard. I was finally like “Okay, I have to make money. I have to do it.” I think not having the hair was a big part of that.

But I finally went in and was like, ‘I can start in two weeks,’ and that was the week before everything closed. I’m still unemployed, the restaurant closed, and I’m still back in my bubble.

It’s really not much different than what I was doing, except now I’m still unemployed and financially hurting, but I’m just used to it now. I’m in my bubble, staying safe!

Last message to other cancer patients

It’s never fun to get cancer. It’s so weird I did. It’s hard to go through, and people are always just looking for someone to relate to, one of the reasons I’d do this video. I kept it really quiet. I didn’t want people to pity me, so I did my own thing.

Chemotherapy is a full-time job, so you shouldn’t feel guilty for not doing anything because your body is working really hard to fight off cancer. You’ll get through it. Just accept the help from those around you.

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